Hi, My name is Ashley, I am 18 years old. I have a beautiful little girl named Mariah. She was diagnosed with FULL TRISOMY18 at birth. I would like to tell you our story. When I was sixteen I was shocked to find out that I was pregnant! As I do NOT believe in abortion, that was out of the question. I never thought about giving her up. From the moment I knew there was a growing baby inside me I wanted her. I was scared to tell my family at first, but I did and they were mad... But then they got over it in a few days and were really happy.
Though out my pregnancy I never had any problems. I only got sick one time. I was happy about that. I celebrated my 17 b-day when I was 3 months pregnant. I took my vitamins, went to all the classes, prepared to breastfeed. I bought a crib, clothes, diapers ECT.. I had a big amazing baby shower. I went to all my doctor's appointments. I was always told you are doing great. The baby's growing fine, she will be a healthy 7 pound baby girl. I got all my blood work done. That all came back good. I was getting big and everything looked and felt normal.
The due date was right around the corner. Then I was told I was 2 weeks late and they planned to induce. So the morning came and went. I was in labor for 17 hours and didn't feel a thing. Around 12a.m. my blood pressure dropped and Mariah's heart rate did too so they did an emergency c- section...! I was scared. The procedure was not as bad as I thought it would be but it did hurt a lot after. So there we are at 12:26am I gave birth to a beautiful baby girl. She was 5pounds 1oz and 18inch. long :)..! But she was not crying. That scared me ALOT. She finally cried and that was the best sound I ever heard. I can't even explain the thoughts I was having and the emotions I was feeling but I know my heart felt happy and I cried like a baby! Then they knocked me out!! :( I woke up 30 min later in a diff. room. I was out of it. Brian her daddy came in. They got me stable and took me back to my room. That's where I was told there was something wrong with Mariah but they didn't know what. I couldn't see her because I couldn't leave the room. She was hooked to a bunch of stuff so they couldn't bring her in. I begged and I begged to see her but all I could see was pictures. Finally about 9a.m. I was helped into a wheel chair so I could see my baby for the first time. It was magical and immediately I had a love I can't explain.
Later that day Mariah was getting worse and they still didn't know what was wrong so the sent her to MUSC Childrens hospital. Her daddy went with her. It was one of the scariest and saddest times of my life. The next day came I thought she would be fine. Well it was about 12p.m. when my aunt and cousin went to get lunch. I was in the room ALONE watching TV, just thinking when I got a phone call. It was a doctor from MUSC. I thought she was calling to tell me how great she was doing. Then she said we think there is something wrong with the baby. My heart dropped and my whole body got heavy. I said well what is it, is she going to be slow, need surgery, disabled? Then she said we think she has something called trisomy18. I said well, what is that, thinking that doesn't sound that bad. Well it was. She told me it was terminal and I asked what that meant and she told me they thought she would pass away soon maybe within the month.
I didn't understand. I did everything right. I wanted my baby. I just cried and asked God to please not take my baby. Then the nurses came and my family came back and everyone was asking whats wrong No one understood. I told the doctors to discharge me or I was leaving. My baby would die without me. I was so scared and confused, nothing made since. I wanted my baby so badly. I made plans and had everything ready. All I could think about was going home without my bundle of joy. This was supposed to be the happiest time and it was the saddest. We had to learn all about trisomy18 what it was what it meant we were facing and it was so scary. I didn't meet all my wonderfully tri mommies right away. So I didn't know that there are so many happy living kids with trisomy18. We stayed and learned how to take care or Mariah and what to do when we went home. We also got set up with hospice and went home planning a funeral instead of a birth announcement (which we later did).
We had to be really careful with her. She had a lot of problems such as a V.S.D, failure to thrive, couldn't swallow, horse shoe kidney, really bad retractions ECT. Well it was really hard at first. I felt really alone. No one else could understand what I was going though. Things where scary and different than we planed but Mariah keep fighting. She never stopped breathing, not once.:) She still didn't grow much but was doing fine otherwise. When she was 2 months old I decided my baby's a fighter and she wants to be here and God has a plan for her. So when I took her to the cardiologist I told him i want my baby to have heart surgery. I want her to have a chance at life. Luckily we have great doctors here and they were willing to do it. He planed it for when she was 9months old. Later that week I got a phone call saying we want to do it now, can you bring her in. I said yes and we left that day. They wanted to try and fatten her up for the surgeries. She also needed a g- tube(Mickey). She didn't grow quickly it took a couple of months but she got there. I was told all of the things that could happen and decided she could die with or without it and if she is going to die I would rather know I did everything i could to keep her alive. So we did it and it went great. Right away she
started gaining weight and getting bigger. I was told if she lived she would probably be a vegetable. But as the LORD has blessed us she began doing really well. We went home and she started smiling and doing baby things.
We have been in and out of hospitals since but Mariah is a fighter and God is on her side. I am here to tell you believe, never give up, never stop fighting. Don't let anyone or anything change your mind. I was told Mariah would live 30 days and had less than 1% chance to live past her 1b-day. I was told she would be a vegetable. I would cause her more pain than anything. It would be a waste; your young don't let this hold you back. I was told sad things, bad things, no good things. But I let God decide when and if it was my baby's time. I prayed and I did ever thing I could; doctors and therapies, and working with her in and out of hospital. I gave up my childhood for a decision I made when I was 16. A decision that gave me a lot of hard choices and decisions and stress, sadness and happiness. I gave it up for something better, a happy healthy child.
Times get rough and I pray and God ALWAYS comes though, if not in one way or another. I'm here to let you know, don't give up! I finally found tons of other people and kids like mine. I found tons of support and help in the community and around the world!! You can do this you can choose life for your child. It's not a normal one, and it's not easy. It is a fight. But it's all worth it when you see what your love and support and advocating can bring. It doesn't always end in life but at least you will know when your child grows their wings and returns to a better place with no pain or sickness, at least you did your job. You tried your best to keep your angel here. I am now 18. I am a single mom. I can't work, and I gave up my childhood. BUT I have gained a beautiful healthy baby someone i love and know loves me back no matter what. I know i did it for the right reasons and I would never change a thing. I now know my baby was sent here. She was sent here to change me, to teach me. I have learned how to be a better person, a loving person, to pray to God, to make better choices, to be a Godly person. She teaches me the meaning of life and gratefulness, the meaning of love and, what I want out of this life, and so much more.
Mariah is now 14 months old and as happy as could be. She can smile, play, hold her head up, roll over, and so much more. She is learning and growing every day. And I know its because I choose life for her. She has had several surgeries, spent a long time in the hospital, had many procedures and though it all she has come out a fighter. And she is still a happy, healthy baby for the most part. GOD HAS BLESSED ME AND I PRAY THAT HE WILL BLESS YOU TO. I PRAY YOU CHOOSE LIFE AND FIGHT FOT IT!!!!
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.